Diagnosed With IgA Nephropathy? Ask Your Doctor These Questions

Getting a new diagnosis can be overwhelming, especially if it’s a complex condition like IgA nephropathy. There are a lot of feelings competing for space in your head. Relief that you have some answers, fear about the future and lots of questions.

We asked nephrologist Salem Almaani, MBBS, to share questions you can ask to get the most out of your next appointment.

Questions to ask after an IgAN diagnosis

It helps to do a little research on IgAN ahead of time. That way, you’ll be prepared to ask good questions and get the information you need out of your next appointment.

“Going in with some background understanding of the condition is always a good idea,” Dr. Almaani reinforces.

What did my kidney biopsy show?

If you have IgAN, chances are pretty good your provider diagnosed you based on the results of a kidney biopsy. That’s when a provider (usually your nephrologist or an interventional radiologist) uses a needle to get a very small sample of your kidney. They then run tests on the sample to figure out why your kidneys aren’t working as they should — and see how much damage the disease has done.

Dr. Almaani says going through those results in detail with your nephrologist is crucial for understanding what’s happening in your body. It can also give you a sense of what to expect moving forward.

How many people with IgAN do you see?

IgAN is a complex kidney disease — and not all nephrologists have the training or experience to give you the care you need.

“IgA nephropathy is quite dissimilar to other kidney diseases,” Dr. Almaani clarifies. Many of the most common kidney conditions are the result of other chronic illnesses, like diabetes or vascular disease.

IgAN, on the other hand, is an autoimmune condition. And it specifically affects your glomeruli, which are the tiny little filters that remove waste from your blood. So, you want to work with a nephrologist who:

• Specializes in glomerular diseases
• Has experience treating people with therapies that target their immune system

If the nephrologist who diagnosed you doesn’t check those boxes, ask if they can recommend somebody who does.

Who else will be on my care team?

IgAN is usually managed by a team of medical specialists, not just a nephrologist. That’s because your kidneys affect — and are affected by — lots of different organs and body systems.

“The biggest two groups of people that help support patients with IgAN are mental health providers and social workers,” Dr. Almaani reports. He says it’s also common to bring in your primary care provider and, if your condition progresses to stage four or five, a renal dietitian.

If you have more than one chronic illness, your care team may expand to include those providers, too.

What treatment do you recommend and what are the potential side effects?

For a long time, the best doctors could offer someone living with IgAN was supportive care. But today, there are several treatment options available. And the approach you take will be tailored to fit your needs.

“Ask your provider what the best approach is for you and why,” Dr. Almaani recommends. You should also inquire about:

• Side effects to be on the lookout for
• How long treatment takes to have an effect
• How to tell if it’s working
• What next steps are if the treatment doesn’t work

Am I a good candidate for a clinical trial?

There are lots of different IgAN research projects and clinical trials ongoing. If you’re working with a nephrologist who specializes in IgAN and other glomerular diseases, you may have an opportunity to participate in them.

For some, Dr. Almaani says that getting involved means gaining access to promising therapies faster — and a chance to help shed light on this condition.

It’s not the right choice for everyone, and not everybody who wants to join a trial ends up qualifying. But you can benefit from knowing about research studies and clinical trials in your area.

Do you recommend I have a tonsillectomy?

You may have heard that people with IgAN sometimes have their tonsils removed as part of their treatment.

It sounds random, right? But Dr. Almaani says that there’s evidence to suggest that IgAN starts in your mucosal immune system, which includes your gut and tonsils. And some studies (most of which were conducted in East Asia) have suggested that some people with IgAN benefit from tonsil removal.

Whether this question is worth asking depends, mostly, on where you live.

“Current guidelines do not advocate for tonsillectomy in the United States and Europe,” Dr. Almaani notes. “The recommendations may be different if you’re in Asia or if you have Asian ancestry.”

Still, let your nephrologist know if you have:

• Enlarged tonsils
• Recurring tonsil infections (tonsillitis)
• Frequent tonsil stones
• Sleep apnea that your tonsils may be making worse

Your provider may want you to be evaluated by an otolaryngologist, a specialist in conditions affecting your ears, nose and throat.

What’s my prognosis?

This is a fancy way of asking one of the first questions anyone has when they get a new diagnosis: What’s going to happen to me?

The answer can vary widely from person to person. Dr. Almaani says the three factors that play the biggest role in shaping your IgAN journey are:

• How well your kidneys are functioning
• The amount of protein in your pee (proteinuria)
• How often there’s blood in your pee (hematuria)

“These are the three most important things to look at,” he adds. By tracking these markers, your nephrologist will be able to tell how fast the disease is moving and whether the treatment you’re on is working.

What can I do to delay or prevent dialysis?

Dr. Almaani says that the most common question he gets from people who’ve been diagnosed with IgAN is, “Am I going to be on dialysis soon?”

It’s a fair question. Dialysis is a lifesaving treatment for people with kidney failure, but it’s physically and emotionally difficult, and you need to make several lifestyle changes to be successful.

Not everybody who gets an IgAN diagnosis ends up needing dialysis. It depends on how fast and how far your disease progresses. And now that you have a diagnosis, you’ll be able to work with your nephrologist to protect your kidney function.

“If we can reduce the protein in your urine to a minimum, then we can get more life out of the kidneys,” Dr. Almaani explains. Your provider will walk you through the treatment approaches and lifestyle changes that are most likely to help.

Don’t be afraid to ask questions

You don’t need to learn everything there is to know about IgA nephropathy all at once. Do a little research and start asking questions, big and small. If something is unclear or you need a refresher, ask again. If possible, take notes or have a support person join you at your appointments.

Open, honest communication with your providers can help you feel more informed and confident about the treatment going forward.